Advocates Respond to CDC’s Research Plan

January 7, 2014

By Kim McCleary
President & CEO
The Solve ME/CFS Initiative

For nearly two years, the Solve ME/CFS Initiative has been working to effect a more robust research effort at CDC. In spite of these diligent ongoing efforts, the past two years of dialogue and public testimony have produced a 5-year draft plan from CDC that is substantially the same as what CDC has been reporting since 2006. Status quo. Groundhog day. Déjà vu. All over again.

In response to CDC’s request for input on its draft plan, the CFIDS Association prepared a detailed response, making both criticisms and recommendations for how one-half of the nation’s investment in CFS research will be spent through 2013. Our letter is posted at http://www.cfids.org/temp/research-plan-response.pdf. We used many of CDC’s public reports to document the lack of progress and failure of the program’s leadership to meaningfully advance practice and prevention to improve patients’ lives.

To shift the dialogue and demonstrate a more united front of the research, clinical and patient support communities against the status quo, we invited individuals and organizations to “endorse” the letter responding to the Action Alert! More than 1,000 advocates responded. Thank you!!!

$20 million spent over the next five years is hardly sufficient to address the public health challenges that CFS presents, but it’s too much money to waste on a weak, ineffective CDC research plan. Enough is enough.